Today was a good day. John got up early. Early as in 11:30 AM. He has been feeling a little bit better lately and hasn't caught anything in a few days. So he was able to get up this morning and make a doctor's appointment. And get some bloodwork done. And he even came home and helped with some housework.
I made a chicken dinner with the trimmings. It was real nice to eat together and have some quality time.
I also received two books in the mail that I had ordered. One is called Bone Marrow and Blood Stem Cell Transplants from bmtinfonet. The other is called Across The Chasm, A Caregiver's Story by Naomi Zikmund-Fisher. I feel so good to be armed with information. It is empowering.
Well, I thought it felt good anyway. Until I started reading the caregiver book. The caregiver book is written by a woman named Naomi whose husband had MDS and was waiting to have a bone marrow transplant. (He eventually does have a successful one.) Each page is written in entry form just like this journal. She wrote it to keep others informed as to her husband's progress. Well, I was thoroughly into the book, and it was helping me, until I got to this one entry.
Actually, this particular entry was written by her husband, Brian Zikmund-Fisher. He explains that he was only given about 25% chance of making it through the first year of the transplant. He explained why. Now if you are squeamish, I suggest you stop reading now! Seriously.
A bone marrow transplant patient is given extensive chemotherapy and/or radiation before he starts his transplant. During this time, the chemo destroys his bone marrow and his immune system. The purpose of this is two fold. The first reason to destroy the bone marrow is to get rid of every cancer cell that is residing in the body. The second reason to destroy the bone marrow is so that the new donor's bone marrow can be added.
Herein lies the big risk. Without an immune system, the transplant patient is vulnerable to any infection that comes along. As Brian explains it in the book, "even a minor cold can kill you, and unfortunately, sometimes it does."
So that is what I read about today. Not too much fun stuff. Pretty scary. I have also read about other complications to a bone marrow transplant. One is GVHD, which happens when your body is trying to reject the new donor's bone marrow. And then there is the total failure to engraft. This right out kills the patient. Total engraftment is very rare these days I have read, but nonetheless, a possibility.
OK, so if you have read to here, you probably have guessed how nervous I am. But still hopeful.
Oh, and modern medicine is ALWAYS improving. From glancing at the book, Brian had his bone marrow transplant in 1998 or 1999. Modern medicine has come a long way. These transplants are improving.
John and I have hope. Lots of hope.